As anyone who has read my blog knows, I am a huge advocate of diet being part of the management of the disease. I also know that what affects me doesn't necessarily affect someone else the same way. For the last six months, we have eliminated gluten from our diet. This plan was based on a lot of research that says the inflammatory reaction that can be triggered by the gluten can make the MS worse. I am up for trying anything that will help. In the last week, I had two dishes that probably had gluten--one was made with soy sauce and the other had a small amount of binder. Both dishes were really good. However, a few hours after, my legs started having the sharp, burning pains, my balance was off, I became very fatigued. After the symptoms started, I spoke to the cooks and found out the ingredients. The dishes were dinner and I had had some crazy days. So the question became food or fatigue.
To investigate this, we decided to do a challenge test. Not a blind challenge. I am the main cook when I am home and we wouldn't have bought the ingredients to have in the house anyway. There was a lot of discussion about psychosomatic reaction, but it was the only good way to test it. Having a reaction a few hours after eating a particular food is how I stopped eating red meat. Ultimately, whether it is physical or mental, does it matter if you eat something and then feel horrible?
What I know is that shortly after the meal, I felt bloated and lethargic. A few hours later, my balance was a little off and the sharp burning pains started in my calf and ankle. I had a tough time sleeping that night. The next morning, my hands are tingling, my face (trigemminal) is tingling, and my foot is asleep. I felt none of this yesterday morning. So, that kind of answers the question for me. If it is something that makes me feel bad, then I need to skip it.
There are blood tests to check for gluten sensitivity. There is endoscopy and biopsy to diagnose celiac disease. For me, if just making the diet modification solves the problem, why do that? I am just going to stick to my diet and not worry about the "diagnosis."
Monday, June 16, 2014
Wednesday, May 21, 2014
Depression
For all of the bad things that living with MS can bring, I truly believe that depression is worse. People don't want to believe that it is a disease. And worse than that, is that no one really knows how to treat it. It is cyclical--like my MS, it could be called relapsing-remitting. So time is spent figuring out how to keep it together for going to work, managing everything at home, and just basically remaining functional, all while fighting the urge to load some stuff in a backpack and disappearing. I have absolutely no doubt that that is how some people end up homeless.
It has been shown that the effects of exercise and the effects of antidepressant drugs are about the same. The side effects are greatly different. Exercise: side effects include weight loss, production of vitamin D from being in the sunshine, the ability (sometimes) to better. Antidepressant drugs: side effects include weight gain, lethargy, possible suicidal thoughts (I swear it is on some of the labels). By that, exercise is definitely better. The hard part is making yourself get up, put on your shoes, and get moving. It is a whole lot easier to take a pill. For me, that doesn't work. Sometimes it even makes it worse.
Today a friend of mine did me a big favor. My work out had already been short--but I had done something. I was talking about the reasons I probably wasn't going to run today. She listened, commiserated some, then gave me a friendly "challenge" and the kick in the butt I needed to go finish get my run. It was still a short work out. But, in the end, I feel better than I would have if I had just quit.
That is an instance that totally explains depression. It is very easy to get caught in reasons why it is there, why you can't do anything about it, and to be lost in the mental black hole. Once you see it, you are obligated to do something about it, even if it is just that first step. It is hard. And some days all you can do is go from point A to point B and that is about all there is, no extra. But, if you push through it, it will eventually pass. But, damn, it is a tough road.
It has been shown that the effects of exercise and the effects of antidepressant drugs are about the same. The side effects are greatly different. Exercise: side effects include weight loss, production of vitamin D from being in the sunshine, the ability (sometimes) to better. Antidepressant drugs: side effects include weight gain, lethargy, possible suicidal thoughts (I swear it is on some of the labels). By that, exercise is definitely better. The hard part is making yourself get up, put on your shoes, and get moving. It is a whole lot easier to take a pill. For me, that doesn't work. Sometimes it even makes it worse.
Today a friend of mine did me a big favor. My work out had already been short--but I had done something. I was talking about the reasons I probably wasn't going to run today. She listened, commiserated some, then gave me a friendly "challenge" and the kick in the butt I needed to go finish get my run. It was still a short work out. But, in the end, I feel better than I would have if I had just quit.
That is an instance that totally explains depression. It is very easy to get caught in reasons why it is there, why you can't do anything about it, and to be lost in the mental black hole. Once you see it, you are obligated to do something about it, even if it is just that first step. It is hard. And some days all you can do is go from point A to point B and that is about all there is, no extra. But, if you push through it, it will eventually pass. But, damn, it is a tough road.
Monday, April 28, 2014
cheaper than therapy
People ask me, "what do you do when you are really tired?" The answer: I run. When you don't feel good? I run. What about those crazy, kick your ass kind of weeks? I run. As counter intuitive as it seems, the worse I feel--tired, depressed, yucky feeling, the more I need to run. I may only run 3 miles, but I go run. Afterwards, I feel better. It isn't the feel better like the sun just came out from behind the clouds and everything becomes bright and happy. It is more like the feel better that says I can go through one more day. Things aren't nearly as bad is they could be and I can keep going.
Is the mental and physical demand for a run similar to an addiction? Probably, at least in part. The endorphins that are released with physical exercise cause a physical reaction in the brain similar to the reaction the body has when drugs are consumed. That makes you feel good. And the addiction comes from looking for that next hit to make you feel good. And as anyone who has ever had problems with drugs will tell you, you spend a lot of time looking for that next fix to feel good. The advantage with running is that it is a lot healthier than other addictions. It is cheaper, too. Having done the math on my former cigarette habit (1 1/2-2 packs a day), I can guarantee that running, even with shoes, entry fees for races, travel, and clothes, it is still cheaper.
More that the addiction, is that it keeps me as healthy and functional as I can be. I have not been feeling that great for the last couple of months. I have been really tired, having more muscle spasms in the middle of the night than is average, my hands feeling like the hamburger helper glove. What I have found is that when I don't run or go to the gym, that night and the next day, all of those feelings are worse. Some of these days, it is hard to drag myself out of the house. Usually once I get going, I feel better. I run outside, I lift, I do something. Usually in the morning, because by evening, I am done. In the evening, it is more of a slog than it is other times. But the most important thing is to go.
So, each day, I run. Some days are a little slower. Some days are a little shorter. But everyday is something. That is what keeps things okay and keeps me going. As my headband says:" cheaper than therapy."
Is the mental and physical demand for a run similar to an addiction? Probably, at least in part. The endorphins that are released with physical exercise cause a physical reaction in the brain similar to the reaction the body has when drugs are consumed. That makes you feel good. And the addiction comes from looking for that next hit to make you feel good. And as anyone who has ever had problems with drugs will tell you, you spend a lot of time looking for that next fix to feel good. The advantage with running is that it is a lot healthier than other addictions. It is cheaper, too. Having done the math on my former cigarette habit (1 1/2-2 packs a day), I can guarantee that running, even with shoes, entry fees for races, travel, and clothes, it is still cheaper.
More that the addiction, is that it keeps me as healthy and functional as I can be. I have not been feeling that great for the last couple of months. I have been really tired, having more muscle spasms in the middle of the night than is average, my hands feeling like the hamburger helper glove. What I have found is that when I don't run or go to the gym, that night and the next day, all of those feelings are worse. Some of these days, it is hard to drag myself out of the house. Usually once I get going, I feel better. I run outside, I lift, I do something. Usually in the morning, because by evening, I am done. In the evening, it is more of a slog than it is other times. But the most important thing is to go.
So, each day, I run. Some days are a little slower. Some days are a little shorter. But everyday is something. That is what keeps things okay and keeps me going. As my headband says:" cheaper than therapy."
Tuesday, April 22, 2014
Finally spring...
I run outside year round in all weather. I run in the cold, I run in the rain...I don't run in the cold rain. And I don't run if there is snow/ice on the sidewalk. I don't want to fall. There is enough risk of that without any help. Because of this, I have spent a lot of time on the treadmill this winter.
But, it is finally spring. It is warm. The sun is shining. Trees and flowers are starting to bloom. And I am blessed to not have allergies. That is right. Flowers blooming, oak pollen (which there is a lot of around my house), molds from under the wet leaves that have piled up....none of it bothers me. I might get a stuffy nose from mechanical irritation from so much stuff floating around, but no itchy eyes, no swollen sinuses. So I can run outside in the spring with no problems. And this is my favorite time of year to run. There is sun, the temperature is perfect, and it doesn't get dark too early.
My favorite place to run is down by the water. If you saw the video (http://www.healthcentral.com/multiple-sclerosis/d/LBLN/living-with-ms/?ic=colnav)
you saw the pictures of my favorite place. What you can't see in that video is that it was damned cold that day. I had a sweatshirt and the crew was wrapping me in blankets between takes. Luckily I was running slowly, so I didn't get too sweaty and have a wet shirt on. But I do love to run there.
I have also started cycling. I am going to be riding with a team for the bike MS event. I enjoy the ride, but it isn't a run. It would probably be better if I didn't have to load the bike to go somewhere to ride. I don't like riding on the main road in town. People are in too much of a hurry and don't see the cyclists.
Either way, it is spring. Between working in the yard, getting the flowers to grow and trying to grow some veggies and running in the sunshine, my favorite time of year is here. Get outside, get some sunshine to heal the winter depression, and enjoy the season. It will be summer and hot soon enough.
But, it is finally spring. It is warm. The sun is shining. Trees and flowers are starting to bloom. And I am blessed to not have allergies. That is right. Flowers blooming, oak pollen (which there is a lot of around my house), molds from under the wet leaves that have piled up....none of it bothers me. I might get a stuffy nose from mechanical irritation from so much stuff floating around, but no itchy eyes, no swollen sinuses. So I can run outside in the spring with no problems. And this is my favorite time of year to run. There is sun, the temperature is perfect, and it doesn't get dark too early.
My favorite place to run is down by the water. If you saw the video (http://www.healthcentral.com/multiple-sclerosis/d/LBLN/living-with-ms/?ic=colnav)
you saw the pictures of my favorite place. What you can't see in that video is that it was damned cold that day. I had a sweatshirt and the crew was wrapping me in blankets between takes. Luckily I was running slowly, so I didn't get too sweaty and have a wet shirt on. But I do love to run there.
I have also started cycling. I am going to be riding with a team for the bike MS event. I enjoy the ride, but it isn't a run. It would probably be better if I didn't have to load the bike to go somewhere to ride. I don't like riding on the main road in town. People are in too much of a hurry and don't see the cyclists.
Either way, it is spring. Between working in the yard, getting the flowers to grow and trying to grow some veggies and running in the sunshine, my favorite time of year is here. Get outside, get some sunshine to heal the winter depression, and enjoy the season. It will be summer and hot soon enough.
Sunday, March 30, 2014
Fatigue...
I am not good at slowing down. I work hard, I play hard, always finding time for a run in the middle of it. But sometimes, you just have to stop. Fatigue is a very real thing with MS. If you try to ignore the disease, it will bite you.
I had that experience this weekend. I have had a busy week. Work has started picking up again. That is a good thing. Then, on my day I should have gotten home early, there was a wreck that had traffic stopped for 2 hours. Instead of waste that two hours, I went for a run. I was late getting home and late getting to bed. Next day, get up early, followed by an exciting, but late, night. As that day drew to a close, I was done. We were standing for the final prayers. Suddenly, I was dizzy, my legs were tingling and getting weak, I was hot. Instead of falling down, I sat. Some days I am smarter than others. Amy brought me home and put me to bed. The next day I slept for about 4 hours, got up for a few, and then went back to bed for another 10.
The fatigue with MS is very different from just being tired. For me, it manifests as both physical and emotional--probably the depression jumping in too. My arms and legs tingle and hurt. My legs are weak--just squatting down to pick something up is a challenge. My vision is off--it is like I am looking through a prism. I have a hard time holding on to things. I cry easily. I don't know if that is part of the problem or if it is just the manifestation of the fear.
I think I just needed some rest. It is better today. My legs aren't quite as heavy. I can pick things up a little easier. But it is always a reminder. MS is there. And don't you forget it. It will be ok. Today will be an easy day, going back to feeling better and getting back on schedule for everything. That is the best fatigue management tool there is....keeping everything on a schedule.
I had that experience this weekend. I have had a busy week. Work has started picking up again. That is a good thing. Then, on my day I should have gotten home early, there was a wreck that had traffic stopped for 2 hours. Instead of waste that two hours, I went for a run. I was late getting home and late getting to bed. Next day, get up early, followed by an exciting, but late, night. As that day drew to a close, I was done. We were standing for the final prayers. Suddenly, I was dizzy, my legs were tingling and getting weak, I was hot. Instead of falling down, I sat. Some days I am smarter than others. Amy brought me home and put me to bed. The next day I slept for about 4 hours, got up for a few, and then went back to bed for another 10.
The fatigue with MS is very different from just being tired. For me, it manifests as both physical and emotional--probably the depression jumping in too. My arms and legs tingle and hurt. My legs are weak--just squatting down to pick something up is a challenge. My vision is off--it is like I am looking through a prism. I have a hard time holding on to things. I cry easily. I don't know if that is part of the problem or if it is just the manifestation of the fear.
I think I just needed some rest. It is better today. My legs aren't quite as heavy. I can pick things up a little easier. But it is always a reminder. MS is there. And don't you forget it. It will be ok. Today will be an easy day, going back to feeling better and getting back on schedule for everything. That is the best fatigue management tool there is....keeping everything on a schedule.
Monday, March 17, 2014
Karma and Living Well
I ran the Rock and Roll half marathon on Saturday. It was a great run. The last part of the pictures and filming was done at the start line--after I found them--and at the finish . At the expo, I visited the MS Society table. They finally have a charity run team for races, in this case, the Marine Corps Marathon. It has become a lottery to get in, but as a member of the charity group you can get in with the fund raising. This disease needs some help. It is a bad disease. I am lucky. Mine isn't as bad as some.
Early in the race, probably before mile marker 1, I saw a woman with a MS shirt and orange tutu on. I started talking to her. She is a member of Team Strike Out MS. She was running with a group from her work. They invited me to fall in with them, and we ran the whole race together. It was a very cool experience to run with a group. The group stayed together--pit stops, water stops, all of it. The pace was based on the group need. Whether it was the group or the bonding with the MS team, I don't know. I know it was one of the best races I have ever had.
I had my cheerleaders at the finish line. Amy and Sandi had finished their run and ignored/avoided the crew in the finish coral trying to get them to move away. It is always better when you have people waiting at the end. They couldn't go to bag check to get their sweatshirts or they wouldn't have gotten back. I am glad they waited. Fortunately, this time, I didn't fall down.
The film crew did their final shots/interview after the race. They were asking me questions like "how was it," "how did you feel," and I am not sure what else. Now I understand when athletes get asked questions at the finish line why they aren't as articulate as other times. I had a hard time coming up with words. My ultimate answer to how do you feel during the race was "joy." Joy to be able to run, joy to be able to finish.
I am going to be joining Team Strike Out MS for the Bike MS at National Harbor. I will be running as part of the MS Society team for the Marine Corps Marathon. Those of you who know me know I am not usually much of a joiner. Not much in the fund raising thing. It looks like that is changing. Karma puts you where you need to be when you need to be there. I am working on figuring out ways to reach out and help. People with MS need hope. My writing has started this, then the Runner's World article, then the web documentary, now a whole team. I have said it before. My MS isn't like yours. But everyone has to make it as good as it can be.
Early in the race, probably before mile marker 1, I saw a woman with a MS shirt and orange tutu on. I started talking to her. She is a member of Team Strike Out MS. She was running with a group from her work. They invited me to fall in with them, and we ran the whole race together. It was a very cool experience to run with a group. The group stayed together--pit stops, water stops, all of it. The pace was based on the group need. Whether it was the group or the bonding with the MS team, I don't know. I know it was one of the best races I have ever had.
I had my cheerleaders at the finish line. Amy and Sandi had finished their run and ignored/avoided the crew in the finish coral trying to get them to move away. It is always better when you have people waiting at the end. They couldn't go to bag check to get their sweatshirts or they wouldn't have gotten back. I am glad they waited. Fortunately, this time, I didn't fall down.
The film crew did their final shots/interview after the race. They were asking me questions like "how was it," "how did you feel," and I am not sure what else. Now I understand when athletes get asked questions at the finish line why they aren't as articulate as other times. I had a hard time coming up with words. My ultimate answer to how do you feel during the race was "joy." Joy to be able to run, joy to be able to finish.
I am going to be joining Team Strike Out MS for the Bike MS at National Harbor. I will be running as part of the MS Society team for the Marine Corps Marathon. Those of you who know me know I am not usually much of a joiner. Not much in the fund raising thing. It looks like that is changing. Karma puts you where you need to be when you need to be there. I am working on figuring out ways to reach out and help. People with MS need hope. My writing has started this, then the Runner's World article, then the web documentary, now a whole team. I have said it before. My MS isn't like yours. But everyone has to make it as good as it can be.
Tuesday, February 25, 2014
Sharing the story
I could never be a professional actor!!!! I spent last weekend being filmed for a documentary based on my life and the subject of this blog--living well with MS. Don't get me wrong. It was a lot of fun. I have great friends who served as "extras" and were my back up. The film crew was great. They kept us fed and fueled with coffee. There were a lot of laughs. But, that would be a tough job to do every day.
The purpose of the documentary is what I write about. Living well with the disease, not letting it take over and destroy your life. I told the story how I see it. I know how hard it is to get through this disease. I know how tough it is to figure out what you are going to do to make everything work--job, family...managing it all while feeling pretty bad. But I also know how to get out of the depths of despair. You have to find what gives you strength so that you can continually be moving forward. My strength comes from my wife, my faith, and a good run on a regular basis. Not to mention being blessed to work really hard at a job I love.
We have been working on some nutritional aspects of our life to improve it. There is not a lot of research about nutrition. But a lot of people are talking about it. Whatever name tag you put on it....gluten seems to be a big culprit for a lot of people. Another thing being investigated--and there is actually a study going on--is all grain--"paleo" diet. I haven't started with that. I have a little bit of mental reservation--I love my oatmeal for breakfast. But, it might have to change.
For now, I am healthy, MS not withstanding. I feel good. With the diet changes I have made so far, I can feel more of my feet and my handwriting is starting to improve. It is a start. For everyone, keep trying to find what is going to make your life better. Maybe you can't go run. Go for a walk in the sunshine . Dance in the kitchen with your wife. Whatever you do, do SOMETHING. It will start changing your life.
The purpose of the documentary is what I write about. Living well with the disease, not letting it take over and destroy your life. I told the story how I see it. I know how hard it is to get through this disease. I know how tough it is to figure out what you are going to do to make everything work--job, family...managing it all while feeling pretty bad. But I also know how to get out of the depths of despair. You have to find what gives you strength so that you can continually be moving forward. My strength comes from my wife, my faith, and a good run on a regular basis. Not to mention being blessed to work really hard at a job I love.
We have been working on some nutritional aspects of our life to improve it. There is not a lot of research about nutrition. But a lot of people are talking about it. Whatever name tag you put on it....gluten seems to be a big culprit for a lot of people. Another thing being investigated--and there is actually a study going on--is all grain--"paleo" diet. I haven't started with that. I have a little bit of mental reservation--I love my oatmeal for breakfast. But, it might have to change.
For now, I am healthy, MS not withstanding. I feel good. With the diet changes I have made so far, I can feel more of my feet and my handwriting is starting to improve. It is a start. For everyone, keep trying to find what is going to make your life better. Maybe you can't go run. Go for a walk in the sunshine . Dance in the kitchen with your wife. Whatever you do, do SOMETHING. It will start changing your life.
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